Having been in the Eating Disorder culture for several years now, I am always interested in what works and what doesn’t work for other families. There are so many treatment modalities and so many families have developed helpful and creative ways of managing the eating disorders within their homes. It is clear to me that one size does not fit all and that it is often a process of trial and error to find what works best for both your child and your family. It is with this preface that I begin talking about the topic for this post: naming an eating disorder.
Through various support groups, contact with other families in the hospital, and contact through outpatient services, I have seen many eating disorder sufferers and their families give the Eating Disorder a special name. There is, of course, Ed, inspired by the wonderful book “Life Without Ed”, and I have heard many other names applied as well (some I can’t repeat). In these instances, the Eating Disorder is treated as a separate individual or at least a separate personality that is viewed as an entity of its own and independent of the sufferer. There are, of course, variations of this theme as well. Many families will say, “that is fill in blank with name of Eating Disorder talking”, or “Ed, or other name is loud and proud today”. That helps them target the eating disorder and not their child when symptoms are acted upon or some other issue related to the eating disorder arises. It is also a reminder that their child or loved one is not their eating disorder, a reminder which is so necessary.
I have also observed families who do not choose to give the eating disorder a name because they feel that they eating disorder gets too much power when it acquires a separate identity. These families choose to incorporate the eating disorder as they would any other illness. They view it more as an affliction that their child/loved one must live with as they would diabetes or some other physical illness. He/she is not the illness, but he/she suffers with an illness and must learn to manage the symptoms. There is no right or wrong answer to whether or not to name an eating disorder. It is a personal choice that should be based on your family’s needs and on your family’s individual style of coping.
I have referred to my son’s eating disorder in many ways over the years. In a few posts I have referred to it as Mr. Eating Disorder. I have told my son many times that his rationalizations and the fears he brings to my attention about eating “are your eating disorder talking.” I have also repeated many times that my son is not his illness and he is certainly not. He did not ask for this illness and the illness does not define him. Having said all of that, we made the decision not to give his eating disorder a separate name. I guess we kind of developed a hybrid as I do tell him that his eating disorder is talking or telling him lies when he is threatening to or actually does relapse, but even so I have never seen it or treated it as a separate entity.
There are many reasons that I didn’t feel naming the eating disorder would work for our family. The first reason for me was the issue of boundaries which I felt would be blurred in our family if the eating disorder was a separate entity. I could easily see a slippery slope where the eating disorder, with a separate identity, could absorb blame and become an excuse for behavior that would not otherwise be tolerated in my home. My husband and I have been blessed with several children. Our son with who has the eating disorder is the oldest. I feared the example that this would set and the possible confusion caused if their brother could blame unpleasant behaviors or even his refusal to eat and follow his treatment plan on something with another name. I could see this “separate person” being an excuse for these behaviors and consequently something to be desired or jealous of because of this. I feared that it could easily be misunderstood by younger children.
I also felt that the eating disorder was already larger than life in our home. It seemed to loom over all of us all the time. Plans to go away, holidays, trips to restaurants, and schedule changes in general all seemed to revolve around the eating disorder. Even our own lives regarding diet and exercise revolved, to some degree, around the eating disorder. There were the endless debates about the eating disorder (before that was recognized for what it was and stopped) which took mom and dad’s time and attention away from all of the younger siblings. There was a certain necessity to those things and we gladly dealt with them, but I felt like the eating disorder was already big enough without occupying a role as a separate person. Frankly, I didn’t like it very much and having it lurking around with its own identity and name along with all of the people living here already was just too much for me. From my perspective, giving it a name made me feel it was here to stay and I wasn’t interested in a permanent house guest.
I have known others, though, who found that giving the eating disorder a name took the pressure off and, for their family, gave it a distinction separate from their child in a very meaningful way to them. They felt that when recovery occurred they could say goodbye to that “person” and there was a sort of closure for them, even if that “person” returned or visited from time to time.
Should your child/loved ones eating disorder acquire a separate name, I do have a recommendation. The eating disorder must follow the house rules and regulations that your child is expected to follow. The eating disorder should not be the convenient excuse or scapegoat for unacceptable behavior, nor should it be placated. With or without a name your rules and expectations of behavior should not change. Boundaries (hopefully the subject of my next post) are important and should be there regardless.